In an interview, I called my relationship with Huntington's disease "complicated", because you are forced to deal with things that, even if you read about, you are not ready to face.
It is indeed clear that the people most affected by the disease are those who developed it. What is less evident, however, is the upheaval that the disease brings to the lives of people close to the patient.
There are moments in which you deal with a different person, almost an outsider, where you don't know in which way to go, how to relax, how to cope with all this. Times in which you would like to get away from all this and you are guilty for this desire, but when the stress level is too high, it is normal to look for a way out of it . My experience and the people (psychologists) I spoke with made me learn to accept this feeling, they taught me that it is important to find spaces for oneself to ease the pressure. Only like this we will be able to be ok and consequently to be useful for the ones we love, which are just sick and therefore not guilty for the changes that the disease brings to our lives. Only with this mindset we will be able to give them what they need, not only materially, but above all psychologically and affectively.
Now, more than ever, I'm a promoter of the "carpe diem". I try to live and enjoy every moment, everything we can still do together. Life is now, we'll think about the rest tomorrow!